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High calcium score in 24 hr urine test. What's next for testing?
I have severe osteoporosis, with lumbar spine DEXA of -3.9, which is 10.7% worse than 2.5 yrs ago when it was -3.2. My endocrinologist ordered a 24 hr urine test which showed an excessive calcium score of 410 (normal is 100-300). I had this test done 18 months ago and my calcium score was normal at 238.
Has anyone else had a high calcium score in their 24 hr urine test? What's the next step to find a reason for this? Is more testing recommended? I got the results two days ago and haven't heard from my dr.
I know it's not a bad parathyroid gland. I had surgery for this 10 months ago and no bad glands were found. However, the surgery left me with only one good parathyroid gland (that the surgeon could find). He assumed two glands were inadvertently removed during thyroid surgery many years ago, and he removed one good gland that was imbedded within scar tissue around my thyroid. I only had 1/2 of my thyroid before the recent surgery, and the surgeon removed that because it had lots of nodules.
I've seen two endocrinologist and received differing treatment options from them. The first Dr recommended Reclast and when I asked about bone building drugs he mentioned all 3 of them but said Forteo and Tymlos might be an issue because my serum calcium is at the high end of normal. I'm wondering if they wouldn't be a good option since they involve a man-made form of parathyroid hormone and I only have one working gland. The second Dr recommended either Evenity or Fosamax. She's the one who ordered the 24 hr urine test.
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I hope you can do Evenity.
Interesting idea though about Tymlos and Forteo. I would wonder if they would actually be less effective with one parathyroid_?
Evenity is quite potent and most people tolerate it well. It won't work as well, as you know, if you do Fosamax first. Good luck!
I, too, have high urine calcium. No reason is known so it's called idiopathic hypercalciuria. This can be a side effect of Tymlos or Forteo, as they stimulate the parathyroid. I was on Tymlos when this was discovered.-urine calcium 518. My original endocrinologist should have checked me at baseline before treatment started, but didn't. My current doctor tested three months into Tymlos, and I had to stop taking Tymlos. Now that I'm off of Tymlos, my urine calcium is still a bit high, but about half of what it was on Tymlos. I am starting Evenity next Friday. My serum calcium has always been normal. Parathyroid intact. I don't know if any of this information is useful for you, but wanted you to know that you are not alone in having high urine calcium!
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1 ReactionI had high calcium score in my 24 hr urine test initially. However I found I was eating a lot of foods with calcium and was taking calcium supplements through out the day. My calcium score returned to normal once I stopped calcium supplements. Now I only get calcium from food. Have your doctors discussed this with you?
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2 ReactionsI was taken off supplements and ate less calcium, but I’m still a bit high at baseline. I was eating a lot of high oxalte foods that can block calcium absorption so I,m now eating more dairy and spacing it apart from high oxalate foods to see if that helps
I was spilling a lot of calcium in my urine and had hypocalcimia in my blood, which led to cramping in my legs, toes. My endo put me on various Vit D (ended w calcitriol) and the magic drug was hydrochlorothiazide, a calcium sparing diuretic. It helped to retain calcium so my cramping stopped . I still spill a lot of calcium in the urine, but feel better. I just started Tymlos for the osteo (and having side effects..fast heart rate)
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UPDATE: Just got another result from my 24 hr urine test: High Cortisol. I haven't heard back from my Dr yet, but read "Elevated cortisol levels interfere with osteoblast formation and dramatically decrease bone building—resulting in reduced bone density." So this is a reason for my worsening DEXA readings. It's probably also the reason for my high calcium levels, because "To help bring our bodies back in balance, our system releases calcium from our bones and teeth. The calcium helps neutralize the ph balance of the cortisol, helping restore our bodies to neutral."
So this is not good news. I don't know what the next step is? I wonder if bone-building drugs would not be effective until this condition is corrected.
I think this all is somehow related to the my fibromyalgia, which reared up 2+ years ago. I have chronic pain and daily insomnia and these stresses contribute to raised cortisol levels.
So much better to know. Next you'll find out if it is the adrenal gland or the pituitary. Treatment there will help your bones, and allow the use of osteoporosis medications. Cheers to your endocrinologist for diligent care.